Ocrakoke-Day One, an Alzheimer Journey

The place I am staying was quiet when I arrived and no one was around.  A key was left for me at the front door in a white envelope.  Wine was poured in  carafes, waiting for those who were checking in.  I poured a glass of red and took my things upstairs to my room. Not really having any direction, I saw some bikes and decided to ride around the little town. When Jerry  and I were here last, we had only come for the day.  We didn’t ride bikes nor participate in many things.  I felt guilty that I had  “forced” him to come.  But I thought he would like riding the ferry and seeing the island.  I didn’t understand his reluctance.  It was his dementia.  Jerry was well into the late middle stages of Alzheimer's Disease at the time.  We had continued to live life in our new normal.  But, I guess I didn’t realize how trying new things caused such insecurity.

All these things are processing in me now.  His insecurities and why he acted so reluctant. Now, riding through the town, alone, I am reluctant too.  Don’t know why. I suppose it’s because I’m the one who is insecure.

For some reason, I wanted to go the same restaurant where we had had lunch two years ago.  The Dajio is charming with the freshest meals and folk musicians playing.  I asked to sit outside on the patio.  From the patio, I had a view through the french glass doors of the white table clothed room  where Jerry and I had eaten that day.  It was a safe distance. I remember we were served white wine,  fresh spinach wraps and homemade sweet potato chips.  I made a painting of  those wraps.  Tonight, I had mahi over jasmine rice on a turquoise blue plate and pretended to have conversation on my cell phone.  Felt pretty stupid, but the waiter was nice.

To Withhold Medical Treatment or Not....

I can’t give you that answer. Thirteen years ago, Jerry and I both made out Living Wills.  Living Wills state the type of treatment you elect to receive or not receive in the end of life stage.   It is a way for loved ones to be able to carry out the patient’s wishes.  It can be specific even down to the details of administering antibiotics.  Not fearing death (a subject for a later date), neither Jerry, nor I, wish to be kept alive by extraordinary means. We both decided that we wanted to go  naturally with the patient as comfortable and pain free as possible.

As Jerry’s condition has declined, I realize that “end of life” decisions will be a part of the decision making process.  Jerry does not have the capablility to decide these things anymore, so I will be the one who makes the decision as to when and when not to administer medical treatments.  In North Carolina, a living will is not enough.  A DNR order has to be signed.  If not, in the event of an emergency, the paramedics or hospital would be legally required to take all measures to resuscitate.   After all, their job is to save lives.

The leading cause of death in Alzheimer patients are stroke, pneumonia, aspirations, and infections.

Stroke.  I suppose not much can be done about that.  I’m not a doctor.

Aspiration, means, the patient does not have the ability to swallow anymore.  Jerry goes through spells when he chokes on this food, but most of the time, he is still able to swallow.

So, what about pneumonia or urinary tract infections?  Do we treat them or do we act as if these conditions were the natural  side effects of the disease?  It get’s pretty complicated.

An untreated urinary tract infection can lead to serious complications.  Untreated UTI’s can lead to sepsis, or septic shock.  This can result in death.

Last Thursday, hospice left me a message stating that Jerry had symptoms of a UTI and they were taking urine samples to check for infection.  They stated it would take a few days to get the lab results.  It was the first time I was actually faced with making a decision like this.  I was like a deer in headlights, “Oh no.  What do I do?  We said no antibiotics...but, I’m not ready yet.”  I can’t make that decision.  Not yet!

My thoughts were that I couldn’t withhold anything, knowing that withholding that treatment might result in death.  Yet, I do not want to prolong his condition either.  But, I don’t want Jerry to be uncomfortable.  It will burn when he pees, won’t it?  He’ll be up and down needing to pee, he’ll be more confused.  What to do...what to do.  Do I withhold or do I not?  Can you see the tossing back and forth?

Today, when I arrived to see Jerry, I was told that Jerry, in fact, did have a UTI and that the doctor ordered an antibiotic.  They didn’t ask.  It wasn’t written down. Whew!  I didn’t have to make that decision.  Hospice made that decision for me.

I’ll take this as a dry run.  A precursor for the future.  I’d better get myself prepared.  I’ll be talking to my hospice counselor soon.

Memories of Ocrakoke - Getting There, An Alzheimer Journey

This is an excerpt from some journaling I did this past weekend.  A lot of reflection and healing took place. "The last time I was here, the only time, was about two years ago. It was somethng I had wanted to do with Jerry..discover the outer banks.

The wind is kicking up and the weather forecast says possible thunder storms, yet the brightness of the sun is peaking through the holes in the clouds, as if to say, “Come on.”  Two dogs are determined to take each other to task.  We board the ferry in about a half hour.  The cars are lining up one by one.

Everytime I close my eyes I see a vision of a tall, thin man with a white knit shirt and ragged khaki shorts.  He’s standing straight and watching me as I  walk away from him along a white- duned sandy beach. I recognize the beach.  It’s Ocrakoke. The man has dark hair.  The only thing dark on him.

I remember that day two years ago.  I remember it with yearning, but not.  A walk along the sand was all I could do while I expressed my frustration.  I didn’t understand why he wouldn’t move with me.  I thought it was stubbornness.  The memory seems cloudy now.  I can’t quite grasp it.

There’s something telling me to turn around.  I’m trying, little by little, to move forward on my own.  Somehow, I think by revisiting places we’ve been, I‘ll be able to process his not being with me.  I want to turn around and go find him, but I know he won’t be there.  The soul that was my mate has, or is, leaving his body.  His body is now bones, but his essence exists.

The cars are beginning to be loaded.  The gray green water looks fairly smooth but the clouds are gray too and darker gray and moving fast.  Their shadows leave racing spots of sun across the pavement.

There will be lots of people on Ocrakoke Island.  This ferry holds 60 cars, plus there are bikers, the peddling kind.  Now that I am on board, I’m getting anxious to see what lies ahead.  The desire to turn back is all but gone.  The sun is coming out. There’s the horn.  We’re moving out of port."

There are lots of couples on this boat.  The younger couples have water bottles and dogs.  They seem more playful.  The older couples are wrapped up with the wife leaning on the edge and the man’s arms around her...like Jerry use to do with me.  More seasoned with a need to touch.  I see a young girl standing near the side, up on a piece of anchor where the ropes tie up.  She’ s leaning against the edge.  She just let go of the side and held her arms out, like Rose on the Titanic.  Her arms didn’t stay out for long, but for a moment, I bet she thought she was Rose."

“There’s been a bird that has followed us the entire way.  It catches a gust of wind and floats on it just ahead of the boat.  He tosses up and down, back and forth but seems to be in complete control.  The sky s beginning to clear up.  The heavy clouds are behind us.  You can see the banks of rain in the far distance.  Up ahead, there is a glistening.  I think it’s an island. "

Made a Connection - an Alzheimer Journey

Look at him.  He looks totally normal!  Baby blues and a great smile! We made a connection today.  Ever so brief...he was with me.

When I arrived for my visit, the residents were eating in the dining room.  I leaned around the corner and saw how well he was eating.  Not wanting  to distract him,  I stayed outside and took occasional sneak peeks.  He looked so good.  Looked alert.  It smelled like spaghetti.  It was fried fish.  Once he was finished, Ro, motioned me to come in.  I walked over and stroked his shoulder.  He didn’t know what was happening, but once he saw that it was me, he rose to his feet.

We walked down to his room to do “the do” before leaving. We wouldn’t want to go anywhere without accomplishing that first.  Trust me!  Don’t mean to be disrespectful, but I’ve got to say this.  I don’t take him to the potty that often. Not that I mind, at all, but  the staff usually does it.  This time, I knew they were busy feeding other patients, so I decided to do it myself.  Once I got him situated on the “throne” he looked up at me, with puppy dog eyes, and said, “You’re beautiful.”  I was, to say the least, taken back.  What is it about the act of  pottying that ignites such an emotion?  Could it be that it is so personal,  intimate and makes one so vulnerable?  I wonder if he says that to all the CNA’s.  Hmmm.

Today, I decided to do something different.  I needed a few tubes of paint so we went to our local art store.  For reasons I won’t say, I’m safe to say that the employees know us.    I called ahead so they would have the supplies ready and waiting for me.  There was a stool conveniently waiting at the counter for Jerry to sit on while I paid.  When we left, we went next door to the local  bakery where he could get a piece of chocolate cream pie.  We struggled to get him seated but he finally got his bottom all the way onto the seat and his legs under the table.   Today, I wanted to sit across from Jerry, so our eyes occasionally could meet. That usually increases our  chances of a connection.   At first, he couldn’t manipulate his fork or spoon. People were staring.  So what.  Once we got the pie on the spoon, he had no problem getting it to his mouth.  Then, all of a sudden, he began to cry.  He looked at me and said, “I can’t do it anymore.”  (you must understand that was my interpretation of his broken words.)  I reached across the table, took his hand, and said, “It’s ok.  You are doing great!  You are doing great!  That seemed to calm him down, then he “went away.”

It was an “oh, so brief”  connection.  Fleeting but beautiful.

After our pie, it was time to head “home”.  The residents were having their  monthly birthday party that is filled with piano playing razzmatazz music.   “Reentry” goes much more smoothly went there is an uplifting event about to happen.  Sure enough, the troops were being gathered at the door just in time for Jerry to join them.  He never knew I was gone.

Never Enough-An Alzheimer Journey

Yesterday, my youngest daughter and I went to see Jerry.  When we opened the door to the memory unit, there he was.  It was as if he had been anxiously waiting for us.  All neatly dressed in his red Alabama t-shirt, he came with stretched out arms and wrapped them around Katie.  Yet, he was looking over her shoulder at me.  Puzzled, he knew this person he was holding was someone he loved.  “Hi Daddy” she said as she rubbed his arm;  eyes swelling up and turning red.  Mine do the same, now, when I envision them.  TIme with our loved one with Alzheimer is never enough.  The thirst is never quenched.

We turned and walked down the hall, arm in arm, Katie on one side and I was  on the other.  I wanted Katie to have as much time with him as possible, so I sat in the back seat of the car while we did our Dairy Queen run.  She drove to the dock, where we could eat our ice cream and watch the boats.  The country music was turned up and I could see Katie’s sweet hand, tenderly, stroking his hand to the fingertips.  He was sort of oblivious to it yet enjoying it.  The most important thing was eating his ice cream.  The most important thing to her was touching his skin.  I could see it in her eyes, weeping, but trying to be upbeat and strong. She was doing all humanly possible to communicate.  Jerry even eluded to her husband, “How’s....”   She told her how he was a dentist and would be so proud of him.  Her eyes began to well up again.  She told him of her baby boys.  She talked about how she use to swim and how he was at every meet cheering her on.

Katie is a daddy’s girl.  Their bond was strengthened through their competitive spirit.  He would constantly remind her of the “fire in her belly” mental state before a race.  She would give her all until he had to pull her out of the water.

In a way, Jerry’s competitive spirit has brought him this far.  It’s been thirteen years and he is still going.  The beginning diagnosis suggested 10 years.  He was, I’d say, able to “live” for the first 10 years and we altered our lifestyle to take in as much as we could. He had fire in his belly.  I believe he is still fighting this disease, but the fire is beginning to die down.  Alzheimer’s Disease  is definitely winning and will win physically.

Jerry’s spirit will continue, however.  Alzheimer’s disease will NOT destroy his spirit; not now, not  even after death.

For now, we’ll keep spending as much time with him as we possibly can.   Our love for him never ends.

No Regrets

When Jerry’s roommate’s wife  and I met for lunch, we had so much in common.  Mostly, our experiences with our husbands.  Her, George, is much older than Jerry.  He’s 88.  Jerry is 64.   He has been ill since 2006.  Jerry’s been ill since 2000.  Both of us, had come to the end of ourselves. I remember vowing to myself that I would keep Jerry at home and he would die in bed next to me. Our days were completely filled.  I made sure of it.  We were going to live life to the fullest until we could live no more. There was no way he was going to live in “one of those places!”  It was my naive impression that I could take care of him until the end.

Unfortunately, that was not the case.  As with, George, Jerry's cognitive and mental decline became  too advanced.   His needs were far too great and I would actually have done him a disservice to keep him at home.  For one thing, physically.  I am a woman.  He is a man.  As much as I tried to dress him, potty him, help him up and down the stairs, in and out of the car, into the bed and out....it became too physical.  I became beyond exhausted.  Exhaustion breeds impatience.  One who is in the final stages of Alzheimer disease requires incredible patience.

Once I saw the care and consistency Jerry was receiving in the facility, I knew, with no regrets, that he was getting the best care.   He, in some sort of way, knows it too.  Even, today, in his nonverbal way, he gets the message across that “they are good.”   His compliance tells me that he  trusts them.  In a way, I’m glad I placed him while he was still, somewhat aware of his surroundings.  Now, he has become accustom to this place.  It is his home.  He is secure.

Peace in the Valley

Instead of being anxious, I spent a little devotion time, remembering that I am not in control of what is happening.  There is nothing that will happen today, that God is not already aware of.  I can rest in His reassurance. When I arrived, church was going on in the activity room.  Jerry didn’t go.  He was tired.  Sure enough, when I went through the doors to the back, I saw him sleeping on the sofa in the tv room.  He was one of the only ones there...sitting up, just snoozing away.  The minute I entered the room, his eyes opened.  Confused and dazed, he still knew that a hug is always what we do. I wrapped my arms around his skinny body, we walked out of the room, but I could tell he needed some cleaning up a bit.  His CNA and I walked back to his room to do the potty thing and get ready for our date.

For years, it was I who helped Jerry dress.  This time I watched the whole procedure.  I haven’t seen Jerry naked in quite some time.  I realize he had lost weight, but this time, I saw the real deal.  Jerry is six foot four inches and probably weighs 145lbs....at best.  His little buttocks..is well... little.  Just draping skin hanging over those bones.  I only wish mine looked like that!  Nonetheless, I saw how compliant he was. She knew exactly what to do.  He knew exactly how to respond.  He was like a little child, compliantly raising his arms to take off his shirt.  She was gentle, patient, but playful.  She kept his full attention.  Never, once, did he balk at changing.  I could tell he was very comfortable with her presence.

Once, they were finished in the bathroom, she brought him out to sit on the edge of the bed.  She playfully handed him his socks...and one by one...she cut his toenails and helped those socks get on the feet.  She put on his shoes...and encouraged him to tie them..but when he couldn’t,  she’d say, “Good job. You’ve almost got it.”  Then she’d tie them.  There were no verbal sounds from him, just the sound of peace with what I was watching.

We did our usual outing.  Stopped by the Dairy Queen for an Oreo blizzard.  I only had cash, so we could only get one.  Good for him. Good for me.   Today, we parked by the yachts.  I dozed with one eye open, making sure the ice cream didn’t go down his shirt.  He listened to country music and ate.  We were both very relaxed.

I think it helped that I met with Jerry’s roommate’s wife.  We were able to share many stories and we both knew each other’s thoughts, even down to the concerns of our children. It was like salve to a wound, calming, and healing.  Our lunch meeting, before visiting our husbands, prepared us for the visit.  Both, on arrival, were able to smile with a weird sort of peace.  Kind of had to be there.  It’s  “ must do” again.

Good Ole Dolly Does It Again! - An Alzheimer Journey

It was strawberry shortcake time.  The activity director had taken some of the assisted living residents  strawberry picking a few days ago.  Red balloons were taped to each table. I arrived around noon and had phoned ahead to tell the staff that I was taking Jerry out for lunch. Jerry was sleeping in a chair.  I see a lot of that these days.  Usually, he is sleeping or wandering.  One or the other.  Once he was shown that I was there, he popped up and came running.  Now, let me clarify this.  Running, in Alzheimer world, is a slightly less than slow shuffle.  Yet, his excitement to see me is evident.

One of the aides wanted to take him to the bathroom as a precaution before we went on our outing.  Jerry would not let go of my hand, so the three of us walked down the hall together.  Hate to be so personal, but Jerry is so thin, regular “briefs” (as Bob DeMarco calls them), which are disposable undergarments, do not fit.  So, now Jerry wears the kind that tape in the front.  Just wanted to keep you informed of what’s out there in that department.  Hospice provides these.

For lunch today we went to the local fast food chicken place.  Personally, I’m not a fast food kinda gal, but since Jerry is always eating cafeteria food, I figure he likes a “burger and fries” from time to time.  Besides, this way, he doesn’t have to go into an unfamiliar restaurant where he cannot navigate a chair or a booth.  (He doesn’t quite know what to do with a chair these days.  He usually circles them.)   So, we took our chicken filets, sweet tea, and fries to our favorite park for a picnic.

The decision was made to stay in the car and turn up the oldies country music station, like his daddy use to play.   Jerry’s foot actually tapped to the sounds of Conway Twitty and oomp-pahhed with “One Day At A Time, Sweet Jesus with Cristy Lane ...when all of a sudden, Dolly Parton, in Mule Skinner’s Blues, belted out a yodel.  Jerry’s face broke into one of his “shit-eaten” grins and he actually yodeled!   (Excuse, the language, but there’s no other way to describe it.)  He yodeled, not once, but twice!  It was too good to be true!  Good ole Dolly did it again.  I think I’ll tape that song for another day.

Music and ....."What Happened to My Legs"?

They’re cottage cheese!   (No picture today.)  That was my thought today as I quickly passed by my mirror.  It was shocking but it made me laugh! The reason I told you that is because it was a good thing.  Alzheimer world was about to get me down today.  I was spinning myself right down the emotional drain of despair.  To be perfectly honest, it’s hard to find joy sometimes.   A year and a half ago, most of the residents were in, I’d say, the middle of the late stages.  Most were able to connect in some way.  Not many could talk,however, one could belt out a beautiful tune with gusto!  In recent months, however, it seems that many of the residents have declined very rapidly.  Including Jerry.   There is much confusion in the ranks and the staff has their hands full.  The needs are so great and even though Jerry is perfectly fine in his own world,  I feel this tug to be near.  The end stages could go on for weeks or years.  No one knows.  That being said, the caregiver (me), needs to pace themselves in order not to burn out.

After a desperate call out to my friends, I went about the day trying to focus on things that were positive.  Painting.  I turned on my best weapon.  Music!  Triumphant music!   First the Prelude and Title March of Superman, and the Super Crime Fighter from Superman,  The Stampede from the Lion King, concluded with An American Symphony...the masterpiece played by the London Metropolitan at the end of Mr. Holland’s Opus.  I can just see Richard Dryfus waving his baton in triumph and completion.  Waving my brush across that canvas, I was energized to fight another day!

Hopsice called a few hours later  to give me a report on Jerry.  She couldn’t see much change since last week but  agreed with me that he is not aware of his surroundings.  That is reassuring;  a blessing.  But  even though I miss his being able to respond, I still know he knows me.    Nurse Lucy reaffirmed to me that Jerry was in a safe place and getting the best care.  So, as instructed, I’ll remain in my scheduled routine.  Tomorrow, is my  next visit.

Little Things and a Sense of Humor - an Alzheimer Journey

Today, when I drove up to see Jerry, the bus was out front.  The alzheimer residents had just returned from a “scenic tour”.  I think I mentioned in an earlier post about how cumbersome it was to carry these “tours” out.  It takes forever to load and unload.

When I approached the bus, one of the female residents was in her wheelchair on the ramp.  The activity director and a CNA were trying to figure out how to get her off the bus.  The ramp had decided not to work.   I looked up and asked, “What’s going on?”  The activity director responded with , “The ramp isn’t working.  Here.  Catch!”  The resident’s  eyes popped open!  We all laughed.  I watched as they painstakingly, picked each resident up and helped them walk...a slow shuffle...off the bus, then lift the wheelchairs down to the ground.  What patience!

It’s attitudes like this that are the little things.   The little things that are so important. In a year and a half, I’ve honestly not seen any instance where a staff member has lost their patience.  Not to say it hasn’t happened...afterall, it’s a thankless job and requires endless patience.  Last week, I witnessed a new patient acting out.  It was at the end of dinner time and the staff members were wheeling the residence out of the dining hall and into their activity room where they hang out an watch tv.  This gentleman began to get hostile.   Jerry and I managed to slink out of the way as we watched him stand up from his wheelchair, begin to yell, and push his wheelchair aside.  I witnessed as the staff calmly, but firmly  interacted with him, coaxed him back into his chair and swept him on down the hall.  They were well trained to diffuse the situation.

Anyway, today when I went to the back, I saw Jerry “sleeping” in the activity room.  That’s what they call it when he is dazed and out of it in front of the tv.  Barbara, one of the other residents, who always expects a hug, was sitting next to Jerry and began to wave.  I tiptoed over  to give her a hug and Jerry turned his head.  Up he “jumped” with his arms open.  I just love that!  Seconds later, he had no clue who I was, but he was ready to “get outta Dodge.”  I tapped in the code to the door and he opened it.  (I think he’s escaped from time to time because he knows just how to open that door.)  Our trip was to the Dairy Queen where I got him his favorite medium sized Butterfinger Blizzard.  That skinny thing ate the entire thing!  Trips to the “Queen” are good because it’s short, he doesn’t have to get out of the car, and well, .....it’s ice cream.

By the time we returned, the shift had changed.  He really didn’t want me to leave, but we used the old standby “divertion” tactic.  FOOD!  One of the CNA’s coaxed  him with some yogart.  The sweet kind.  He went right over and I slipped out without his even noticing.  Out of sight, out of mind.  He probably didn’t even realize I was gone.

The Kiss Still Remains - an Alzheimer Journey

My son recently posted a photo of Jerry and I on facebook as a Mother's Day tribute.  (What a good son!)  The photo was taken while on  a trip to the wine country in Los Olivos, California.  It was one of the most fun trips we've ever taken, mainly because we were with two of my  most favorite  people...Mark and Michelle.  This trip was taken probably eight or nine years ago.  Jerry had been diagnosed a few years earlier and he was still in the early stages of Early Onset Alzheimer disease.  He was a handsome 55 and I was,....well....ok, 50!  There.  I said it! Anyway, just because someone is diagnosed with Alzheimer disease or any sort of dementia, does not mean you cannot go on living.  In fact, once we were facing the future of such a crisis, we figured we'd better not waste any time, so  we lived life to the fullest with only a few modifications.  Those connections that were made, such as that kiss, are still there today.  The bonds of a relationship do not go away even though  the memories do.  I remember some advice that our neuro psychologist once said, "Don't waste time worrying about what might never happen."  That's some of the best advise I was given and I'd like to pass it on to you.

To worry about the "end" of this disease will rob you of the present.  The end stages will be hard enough when you get there.  In the meantime, the present is a treasure not to be missed.  When the “end " comes, the life you’ve  experienced  will still remain embedded.  Maybe not the details of places and events, but the essence will be there.

Today, life has changed dramatically for us. Our trips sometimes barely make it down the hall. At best, it is to the Dairy Queen and watching the ducks. I'm thankful for that. We may  not be in those galavanting wine country days, but we'll still be taking advantage of the present.  It’s such a sweet, sweet present and, yes, that kiss still remains.

’Til Death Do Us Part - an Alzheimer Journey

This whole scenario with Dotty and Bob DeMarco (www.alzheimersreadingroom.com/) has really brought things home to me...  That this journey will eventually  come to an end. As with Bob, this Alzheimer journey has lasted for so many years that it has become a way of life.  Our way of life.  I honestly think of Jerry’s and my relationship to be nothing other than a beautiful love story.  It's about our saying “I do"... " til death to us part”  in our young years, when we had no idea what it meant.  We were so young.  I was 19 and he was 24.  I was entering college, he was graduating.  We were young and stupid and thought we knew everything.  We lived high on the hog.  We travelled.  We lived pay check to pay check.  We grew to become responsible.  We gave birth to three wonderful children.   We buried our parents.

I remember when he was returning from a trip, I ran down the halls of the airport and threw my arms around him.  It was like a movie. I remember to this day an elderly woman who watched and smiled. There were times, we fought.  Plenty of them.  But no matter how hard it got, we knew we would stick it out.  We had been blessed with parents who stuck it out...so would we.  We had made a commitment to God.

Well meaning friends encourage me to move on.  They say he’s not there anymore.  They say he's not the man I once knew.  While I will admit I would love to be held and have someone care for me...it is only a slight temptation. Very slight.  I am fully committed and  am reminded of our commitment every time he comes to me.  Now He throws HIS arms around ME.  He is still there, in fact, after we finished at the park yesterday, he abruptly got up, turned around and said in a shaky voice, "I love you".  Unbelievable how, he has no words and hasn’t for years, yet those words came out.

In his lucid moments, Jerry knows he’s in decline.  He tries to say it.  I think he’s afraid.  Not for himself, but for me.  He has always been my protectorate.  He knows he is leaving.  He doesn’t want to.  I cling to our few moments of lucidity. The depth of our unspoken connection comes only after many, many years together.  It is a reward.  A blessing from God that could never have been imagined.  There are no regrets.  I don’t know what it will be like when he’s gone.  I don’t know if I’ll be prepared even though I’ve had all this time. Others have experienced loss and have survived.  I will too.  Then I’ll move on, counting my blessings.  I’ll move on knowing we have experienced each other from the beginning to the end.....and I’ll be thanking God for a truly beautiful marriage.

Mother’s Day Tomorrow - an Alzheimer Journey

As a tribute to Dotty, I’d like to thank Bob DeMarco from the Alzheimer Reading Room.      www.alzheimersreadingroom.com/ Bob has cared for his mother, Dotty, for over 8 years.  He has shared their journey and his turning this journey from burden to joy.  I’ve followed him, along with thousands of others.   His devotion to her and their relationship with each other has inspired me.  It continually reminds me to be faithful to the very end, no matter how long the journey lasts.

Dotty has now gone to the hospital and is approaching the end of her mission here on earth, according to Bob.  He sits by her side, as we speak.

Lots of Smiles - an Alzheimer Journey

Today was so good.  It took about two hours to complete an interview with a representative from the VA.  He was there to appoint me fiduciary of Jerry’s funds.  I never really knew what a fiduciary was.....mainly, it means....I get sent to Guantanamo if I misuse or co-mingle funds.  No problem.  Just glad it’s final and that help is on it’s way.

Afterwards, he wanted to meet Jerry.  I suppose it was to make sure he wasn’t some fictitious character that I made up.  Don’t know why I would go through all this if I was making it up.  But, I understand.  There IS a lot of fraud out there and he couldn’t have been nicer.   Course, once he met Jerry, he was convinced.  (The picture above was taken several months ago. Look!  He's actually making eye contact.   He definitely looks different now...but I  prefer to post some of his handsome pictures.)

We “ran” out the door for our outing, when the hospice nurse met us in the parking lot.  She had come in, but all the residents on the front porch pointed to us headed to the car. The hospice nurse was so sweet.  She didn’t want to make Jerry come all the way back inside, so she took his vitals while he was sitting in the car.  It was hot, so he wasn’t very responsive.  She was MORE than kind and gentle with him.  I swear...these people are angels.

Jerry and I had a nice little outing.   Since I couldn’t find a parking place on the main street in front of the ice cream shop, I drove over to the little convenience store next to all the yachts  in New Bern.  I crossed my fingers and told him to stay in the car while I ran in to buy goodies.  He’s definitely declined, so I don’t think he could have escaped even if he wanted to.  Once I piled a heap of junk food on the counter (snicker ice cream bars, a jar of peanuts, and a coke), I handed the guy my card while I peeped out the front window.  Jerry had undone his seatbelt and was in a frozen position, holding the buckle out in front of his face.  Uh-oh!  Still......he couldn’t get his body coordinated enough to get out.  We drove on over to Union Park and found a bench to sit on.  The weather was perfect, sunny, with a little breeze that kept things pleasant.  Ahhhhh.  It was so perfect..sunny...... ice cream bars and a coke. ( I think I just said that twice.)  We stayed for a good 30 minutes, then took a little walk. In case you’re wondering.  Our “walking” is a very slow shuffle and doesn’t go very far.  But, hey.....it’s still a walk.

When we returned to the facility, I noticed that the front porch was empty.  We walked in and could hear the singing.  A  group from a local neighborhood was singing to a packed house....the place was bursting with smiling energy from Hello Dolly.  Loved it!  While Jerry doesn’t respond like he use to....it looked like he heard it and he raised his eyebrows...so I think he liked it.  Don’t ever underestimate what it means to visit (or sing) at a nursing home.  The smiles are beautiful.

Veterans Benefits - an Alzheimer Journey

The financial expenses of caring for someone with Alzheimer disease can be devastating.

For those of you who are entering into this journey, I would recommend consulting with an experienced Elder Care Attorney to have an overall evaluation of your financial situation.  Your attorney can help you plan and watch out for pitfalls that you’ll want to avoid in the future.  You’ll need to check on insurance policies, living wills, health care power of attorney, property titles, etc.  You can find referrals for attorneys through your local Alzheimer Chapter  (in North Carolina, www.alznc.org/) or senior resources organization. ( in Wake County, www.resourcesforseniors.com)

Today I want to mention Veterans Benefits.  Even if your loved one did not serve for an extended period of time, he/she may still be eligible for some sort of assistance.  The application  process takes a long time, so check early and get the process started.  For us, I applied for VA benefits several years ago.  Jerry could have received medical visits, prescription medications and occasional respite visits, even glasses at a much reduced cost.   At the time, we were still very attached to our own doctors, so we did not take full advantage of the VA services.  However, once I placed Jerry in a facility, I began to panic about the cost.  I was afraid our money would run out.  Our situation is unique in that Jerry was very young, he was the primary income earner, he was not eligible for  medicare or medicaid assistance toward the facility cost, nor did our private medical insurance policy pay for anything.  EVERYTHING is private pay!

In a panic mode, I contacted the Veterans Administration in my area again.  I was told about  Aide and Attendance. All the information is online, but this kind gentleman explained, in a nutshell, what I might be eligible for.  The qualifications are pretty specific.  If you qualify, the veteran may be eligible for a monthly income to help offset the cost of caring for their loved one at home or  in a facility.  You can read about this online at www.va.gov/.  Again, the process is long and laborious, but well worth it.

Now, I know from experience that the information can be overwhelming in the beginning stages of this journey.  In fact, there were many days, I couldn’t read or absorb another thing.  I was so confused at all the disjointed information being thrown at me from doctors, social workers, insurance companies, alzheimer organizations, attorneys, etc.  It was too much!  After all, when was I going to do the laundry, sweep the floors, fix the leaky faucet and prune my shrubs!

Just take a deep breath, tackle one or two things at a time, then go out for a bike ride.  Try not to allow yourself to BREAK!  Trust me.....it WILL work itself out in time.

Viewer Discretion Advised - an Alzheimer Journey

For a moment, I’d like to say something really personal.  Actually, the blog is very personal, however, this is the most personal of all.

In a recent discussion with someone, a comment was made, “You seem to think you need God in your life.”  I shook my head “yes”.  They respectfully but resentfully continued, "Well, I figure you’re an intelligent person so who am I to criticize you for that....but you certainly aren’t a sinner.”  I think this person views me as some sort of saint or something.  (Last time I looked in the mirror, my halo had a few dents in it.)  His words caught me a little off guard but it got me to thinking.

Here’s my belief.  Thus, “viewer discretion advised.”

I DO NEED GOD IN MY LIFE.  Having God in my life does not change my circumstances.  It changes my response to them.

Consider if I didn’t.  Jerry and I have been together for over 40 years.  We were childhood sweethearts.  We were, and still are, one flesh.  The “whole” that grew from innocence to seasoned.  Who experienced pain, struggled, played, fought, laughed, planned and built a life together.  We were a wink and a nod, the pea and the pod. (that’s from a song.)  We were the ying and the yang.  But, now ying has lost her yang.  Half of me is almost gone.   What if “US as a whole" was my identity?  Who would I be?   A fat old woman with a curvy hole in her side!  Incomplete!   Is it  possible, in the midst of such a dismal situation, to be positive?  YES!

Once I was someone’s daughter, but my parents died when I was a young adult.  I was a mom, still am, but my children have lives of their own. I’ve found art as a new passion and possibly a new identity.  However, what if my art begins to plummet?  Who would I be then?  A failed artist?   Is it possible to stay positive when life’s accolaides are so temporary?  YES!

At breakfast the other day, a friend and I were talking.  She is training for her first marathon and is a fabulous athlete.  Her practice  13 mile run, a month ago, was proof of her dedicated training and she was right on track to meet her goal.  Then her back went out!  For over a month she has not been able to move, much less walk or run.  Her disappointment and frustration was evident as she tearfully said, “I’m so frustrated.  I wanted to do this for myself.  I am an athlete.  This is who I am, my identity.”  Is it possible to stay positive when the goals seem unobtainable?  YES!

God is my “complete”.  It’s already accomplished, so I don’t need to search for my identity. I find fulfillment is directly proportional to the knowledge of God’s love for me.  His higher calling for me is the underpinning of my strength and a positive attitude.   The sword of Alzheimer Disease runs deep, yet wounds come as no surprise to Jesus who experienced them at his crucifixion. I’ve learned to serve in a way that  I never knew was possible. (And it’s not glamorous.)  The mission as caregiver is humbling yet an honor that has tested my faith and proved it to be true.

Weekend Visit - an Alzheimer Journey

These back to back art shows in Raleigh have been so exciting and uplifting for me.  As a caregiver, it’s imperative to survival to keep moving forward to stay positive. In the past, Jerry was the extrovert, off the cuff person.  I was the introvert, behind the scenes, analytical person.  Now, the rolls are reversed.  While it is energizing to put on these shows and meet people, I am still an introvert at heart.  Think way too much.  Verbalize my thoughts way too much.  THUS, THIS BLOG!

Sunday, after church, was the only day to visit with Jerry this week.  My normal schedule is every three days, but this time it had been a full week.  Deviating from the schedule  usually gets me into trouble.  I was tempted to stay  in my own positive world, away from him, avoiding reality.  But my heart told me I had to go.  The drive to New Bern is two hours.  Two hours of thinking!  Down and back.

When I arrived, Ro, my favorite CNA was on duty.  (I have lots of favorites.)  We all probably wondered if Jerry  would recognized me.  When I walked through the doors, Jerry saw me and his eyes lit up.  He reached out his arms and walked toward me and we embraced with bitter- sweetness again.  Sweetness that he knew me, bitter that it was in this way .  I was particularly emotional because it had been so long and I was reminded again of how much I missed him.  It never goes away.  I was still able to take Jerry out but soon realized that these types of ventures may be coming to an end.  We went to our pizza place but this time it was more difficult.  He was more confused and it was hard to get him to sit down.  He didn’t know what to do with that booth or chair and once seated, he kept getting up.  Thank heavens the place was empty.  The waitress was so kind.  After the confusion of getting him seated, I tried to make small talk to keep his attention.  There was no response.  But then I said, “I went to church today.”  He burst into tears.  THAT KILLED ME!  It was as if he had lost a child or something.  It told me that those things that he holds dear are still within him.

OK.  Onto positive thoughts.  Before going back, we drove over to the park and I put on an oldies station.  Jerry, immediately perked up and we threw a small football.  He loved that!  He even ran a few steps and threw a spiral!   I let Montana go and we played “keep away” from her.  It was a beautiful 15 minutes.  Whew!

The drive back forced me to think forward.  I couldn’t stay in the Jerry mode.  (otherwise, I wouldn’t have been able to drive.)  I’m hoping to think of ways to have more effective visits.  Maybe visit during an activity, or forgo the eating of a meal.  Maybe just a ride to get ice cream, then to the park.  Keep the music going, so we won’t get melancholy.  Keep the visit short, between 30 minutes and an hour.  Avoid staying too long, so that we don’t get too connected.  Hmmm. There I go analyzing again!

Life at the Home - an Alzheimer Journey

The seats were beginning to fill up at gate K7 in Chicago's O'Hare airport.  I was recently waiting for a flight to Los Angeles to see my son. I watch crowded hallways with anxious travelers scurrying to make their connections and was reminded of all the trips that Jerry and I had taken together. In fact, I  remember the exact place where we were sitting, when a cart drove by carrying  the famous Mohammed Ali.  Jerry jumped up out of his seat and reached out to shake his hand.  Ali graciously accepted the handshake.

Things are different now.  But, look at all the memories!

Life at the home is simple.  Simple is good for Alzheimer patients.  Jerry's body is stiff so it is a challenge just to lift a foot to put on a pant leg or put an arm into a sleeve.  Such things as these we healthy people take for granted.

Jerry lives in a secured memory unit that is attached to an assisted living facility. There is one long hallway with bedrooms on each side.  The dining room, activity room, and nurses station are in the center.   It's a cozy place, with warm and caring staff members, and very energetic activity directors.

To a person who is well, that setting would seem like a prison.  I can understand that.  But to an Alzheimer patient, the small setting is very secure and creates a sense of comfort. The routine schedule helps eliminate confusion and chaos that so often sends them into a state of fear and resistance.

Jerry's  day usually begins with a shower and shave, then breakfast at 7:30am.  Music plays to prompt the residents that it's meal time.  Once the music begins, the residents slowly begin to move toward the dining hall where each person has their assigned seats.  Jerry usually is snapping his fingers to the music.  There is usually a staff member at each table to assist in the eating process.

After breakfast, many of the residents go to the main activity room to take an early morning nap.  Usually every morning there are activities like  dancing, exercise, games, or singing.  Some residents are not able to participate because of the progression of their disease, but those who are able, often go on scenic tours around town.

Hospice has been ordered for Jerry, so he also receives visits from a social worker, nurse, CNA, volunteer, chaplain and a doctor.

Jerry is particularly attached to Tom, the maintenance man.  He's tall, like Jerry, about the same age, and easy going.  They are  frequently referred to as the "Tom and Jerry show".   Many times you'll find Jerry walking around with Tom, "changing light bulbs".  There's a certain positive perk when an Alzheimer patient is allowed to contribute.  It makes them feel valued and respected.

Most of the time, activities are held in the morning.  Once the afternoon begins to set in Alzheimer patients often experience "sun-downers".  Sun downers, in layman's terms, happens late in the day, when they are tired.  They can get confused, tired, and agitated so probably the that's the time when a rest would be a good thing.  Dinner begins at 4:30.  Then TV, then bed.

Like I said.  Things are different now.

Amazing Week of Giving - an Alzheimer Journey

The plane landed on Monday morning.  It was the beginning of a great week of fundraising for caregivers.  Wednesday was a gathering of beautiful women who had just begun the Alzheimer journey.  Each time I hear of a new member of the “club”, I weep because I know what lies ahead.  My oldest daughter has taken on the challenge of organizing these women and I was privileged to be a part of the group...as the “SENIOR” .  After all, they were all in their 30’s or young 40’s and have all of a sudden been given this opportunity to care.

These beautiful women must have been devinely appointed.  Many had never met, but somehow heard by word of mouth that there was going to be a gathering.  Several had lost their dads in the past year and were now the sole caregivers of their mom, while shouldering the responsibility of raising their own young children. I heard one young woman, who was an only child, devastatingly overwhelmed at what to do, not wanting to place her mom in a facility, but completely exhausted in desperation. Another was a single mom, who had lost her husband from brain cancer, and now had her mom living with her.  Another's mom was in such denial, yet, the daughter was completely wrecked with the demands of caring for her.

What began as a nice little meet and greet, soon became a safe place to laugh and cry.  And by the end, they were all offering advise and support to carry each other.  The ANGELS were there.

Funds for Caregivers

What happens when the money runs out?

I was recently told of a gentleman who had to sell he and his wife’s  weddings rings in order to pay for his wife’s care.  The financial burden is overwhelming to the point of desperation.  This week we hosted an art sale and fundraiser to benefit the North Carolina Alzheimer Association.  Funds  go directly to assist caregivers in financial need.  The turn out was humbling and the funds raised brought me to tears.

Many came to buy art, many came to buy clothes, but all came to provide support.  What beautiful and generous people.

Thank you.

Caregiver Tips from Santa Barbara - an Alzheimer Journey

Today, I'm going to take a minute for caregivers.  Tips on surviving and thriving.

In an earlier post, I mentioned it's taken a year and a half before I was healthy enough to continue this blog.  That's because I had reached a breaking point of exhaustion and grief and it was taking ALL of me to express any kind of laughter or light heartedness.

Step one.  Breaking point.   I got so angry that I made a resolution that Alzheimers was claiming  Jerry, but it was not going to take me too.  That decision changed my life.  I began to schedule my visits with Jerry to every three days, so that I could be "normal" in between.

Step two. Exercise.  Exercise, you say?  Listen, I was so beaten down that I could barely walk around my block.  I am not exaggerating.  I started Zumba classes,  cried through the first class and almost walked out with my head hung low.  I was a mess!

Set goals to keep on living.  It's been  7 months.  Today, I actually lifted my feet off the ground in a "jog" step  for 6 CONSECUTIVE  minute intervals  and I'm working myself up to my first sprint triathlon.  (well…..maybe)

Step Three.   Acknowledge the grief.  There are still times when I get overcome with grief.  While Jerry is still living, our life, as we knew it, is gone. The most that is there is the essence of who we were.   When tears of grief overcome you, let them flow.  You may as well NOT try to stop it.  When you feel you are drowning in tears and you've taken your last gasp of air, reach down into the inner most of your being and, with a mammoth stroke, thrust yourself back up  to the top.  You'll come popping out of that sea of despair  and you'll gasp in the largest breath of your life.  THAT IS LIFE!

Step Four.  Change of venue.  On occasion, get outta town!  Refresh your spirits.  Keep on trucking.  Move forward.  Make goals.  Don't dwell.  Become focused on flourishing the new you.  A new you will make a much healthier caregiver.  A positive caregiver is a better caregiver.  A happy caregiver makes your loved one happier.  Now, instead of hanging on Jerry and crying in his arms, I can go back and dance with him.